Why is it that people are so obsessed with testing for Downs syndrome, when there are so many other disabilities which cannot be tested for, that are far, far worse?

[wannaBe]

It baffles me.

When we fall pregnant we are offered tests, and scans, most, although not all of which relate to the detection of Downs Syndrome.

At 12 weeks we are offered a nuchal fold scan to determine the likelyhood of the baby having downs, and women over 35 are routinely offered anmio to detect whether the baby has downs.

92% of pregnancies where Downs is detected are terminated .

And yet there are lots of other disabilities, such as cerebral palsy, autism, other disabilities which cause learning difficulties, which cannot be detected in utero, but which can be much, much worse than downs.

So what is it about Downs that is so scary?

Or would people have far more stressful pregnancies if all disabilities could be tested for, and would they feel that they had to be sure their baby would be perfect?

DD1's a far better person than I'll ever be or have been. Far beyond a shadow of a doubt.

I feel so strongly about this I've attempted to post 3 times now but keep getting my words tangled.

My biggest fear is that my DS will either inherit my depression - there is a family history of it, or that he will be a paranoid schizophrenic like his uncle. Or he could die of the same heart condition that killed both my uncle and grandad in their 40s. Or worst of all he could develop the kind of MS my sister has which has put her in a wheelchair, unable to feed herself less than 7 years after the symptoms first showed at age 30. I therefore saw no need to have the blood tests and a nuchal wasn't an option unless I paid £160 so didn't consider it. My baby was here once he was conceived and after 2 losses & years of being unable to conceive again it was fantastic however he turned out.

I am pro-choice in that no-one should be able to force a woman into continuing a pregnancy if she doesn't want to. However, I don't think disability is a valid reason for termination. Allowing this continues to devalue people living with disabilities. I would rather all the money and resources were ploughed into research to find a cure for MS etc but then I suppose I am just a little biased.

Because they can.....

'92% of pregnancies where Downs is detected are terminated'

That figure only takes into account the pregnancies where Down's is detected. It doesn't take into account all the pregnancies where the women declines those extra tests because she knows she's not going to have a termination whatever the outcome of those tests. And there are many women who feel this way.

Jimjam, many people do feel that children with SN are a burden. They may love and not wish to be without them but they are still a burden and much more work than a 'normal' child.
There is no way that having been tested I would want to continue a pregnancy where my child had DS, Edwards etc. I am very pleased that a choice is offered.

"burden" omg dd is not a burden, she is the person who lights up our lives.

I do think if people cannot cope with a baby with sn they should not have children

This is such a personal area but to contribute impartially can i highly recomnd What Doctors Don't Tell You by Lynne McTaggart (i tink)has very informative chapter devoted to pre-natal testing. I would consider it compulsory reading if deciding anything to do with the area. (Rest of book totally interesting and i found jaw-dropping too.)

"I do think if people cannot cope with a baby with sn they should not have children"

Well said mshadow.

Twelvelegs sorry but I so disagree.
my dd's needs are different from ds's.
but tbh I would not say she is harder.
a nt child can get ill, ds has hand countless ops on his ear, dd has never had an op.
I resent the implication that my dd(or other dc's with sn) are a burden when they are 9 times out of 10 much loved family members.

(have dropped the mshadow and back to naormal now)

And many people would see my son as a burden and would assume that life with a child like him is a burden. I do not see him as a burden although he is way more work (currently) than a 'normal' child. I would object strongly to anyone who used that word to describe him.

The idea that people have a 'choice' is the one that I find the bizarrest. Cases of DS are missed for example, and most people have no choice. People live under the very mistaken impression that those of us who have a child with a disability have 'chosen' it. I know hundreds of carers of children with disabilites. I know 2 who knew it was likely before birth. I think the illusion during pregnancy that we have some sort of choice probably makes the whole thing more stressful than need be. First rule of being a parent - you have very little control over any outcome.

We're talking about some not all, I have friends who have siblings with SN who say they found it really hard and they're parents are still very hands on with their 40plus siblings.
Obviously this is not the case for all. To say not being able to cope with a child with SN means you shouldn't have children. How about if you'd rather not? What if you're already disable yourself? What a stupid thing to say.

I expect to be very hands on with ds1 when he is 40+ although at that age he will need to be living away from home (as we'll be getting ready to dying age and he doesn't need to lose parents and home at the same time). He still won't be a burden though and anyone who described him in that way would have failed to understand our relationship at every level.

To OP:

Your thread title question is like asking "Why do people do smear tests when there are so many other organs that can develop cancer?"

I am not saying Down's Syndrome is a deadly disease, but only pointing out that if you can detect & avoid one major disability in your baby, you will. Regardless of the fact that there are other disabilities that you can't test for. Just like you will test for cancer in one little organ although there are so many others, because you can test for it and you can't test for others.

"if you can detect & avoid one major disability in your baby, you will." Not necessarily. Plenty don't. That's a pretty big assumption of the norm.

"many people do feel that children with SN are a burden. They may love and not wish to be without them but they are still a burden". Who thinks that though twelvelegs? The parents of said disabled children? or people who are talking from their own pov ie "I think that if I had a disabled child it would be a burden"? because surely one can never know how you would feel about a child with disabilities until you actually have one.

I do not have a child with disabilities but I would never in a million years suggest that disabled children are a burden. How could I possibly know? Having not been there? All I can do is take the word of jimjams and 2shoes and riven and so many others I have met on mn who do not see their disabled children as being any different to their non disabled children.

To suggest that a disabled child is a burden when you can't speak from experience is very ignorant IMO. It's an opinion, not a fact...

Although I wouldn't have terminated the pg if my baby had a high risk of Downs, I still had the tests. Surely one of the values of prenatal testing is to give the parents as much info as possible? Also, doesn't Downs come with a high risk of heart defects wchih can also be diagnosed antenatally?

you cannot compare disability with cancer.

And actually -whatever someone's choice - I find comparing a child to a cancer pretty offensive (and a fine example of someone not understanding that disabled children can be just that- children- that you love and value every bit as much as non-disabled children.

When Mum was in her late 20s a doctor asked her how her spina bifida affected her "What spina bifida?" She had been a hurdeler at school! I was 12 when I was told my spine was deformed (they thought I'd crushed it in a fall then a specialist said no it was just deformed). I refused all testing in all my pregnancies beyond using their own eyes, knowing if I have a boy (as there is a foreskin anomaly that may need urgent attention coming from the father) and a heart echo (because my stepson as aortic stenosis) because I think what might have happened in different circumstances to Mum and me? Anything serious will be picked up on the scan.

I know of someone who recently terminated a baby with no lower jaw. I was shocked by that, a friend of my family had cancer in her jaw and had to have one made for her, so it's not like the baby had no chances.

I can be quite vocal on my thoughts of late termination. I had a daughter born alive at 20 weeks and she lived unaided for three hours. I also have medical conditions within my family that some people might not want (I like that line "Incompatible with my life") and my brother having gone to special school has many friends with disabilities.

I think Down's is so common (compared to coverage and exposure of other conditions) that it scares people. It's probably made out to be worse than it is. I know Aspergers (which runs through my family) is always quite scary on TV, but my family with it seem "normal" in comparison.

Hope I've not rambled

But is the offering of testing assuming that disabled children are a burden? I think some people feel that way, yes, and some don't.

But the offering of testing is just offering information. The idea of a disabled child being a burden is totally dependent on the person having the testing, iyswim.

I honestly don't think that one person deciding not to go ahead with a pregnancy based on disability is in any way saying that ALL children with disabilities' lives are worth less than others. It is simply them saying 'For me, at this time, in this life, this isn't the right choice'.

It's a very very personal decision, and therefore I find myself unable to judge anyone else's take on it.

I think when you have other children that you need to think about their needs. If my son had a disabled sibling his quality of life would be wrecked. Respite care in our area is very limited and you have to really fight for it.

However I don't know what I would do if I faced with making such a dreadful decision. I don't think I could bring myself to terminate a pregnancy.